Abstract
My daughter and I were alone at school without my husband and three sons, who were all far away. I called my division chief, a friend, for help. He met me in the main waiting room, in the front of the ER.
“Please, please go back and tell them not to subject her to extraordinary measures. She didn't have oxygen for an hour. She doesn't want this life. She doesn't want extraordinary measures; our family doesn't want extraordinary measures.”
My chief disappeared, then returned quickly. He had found the doctors in charge and said, “Her mother is a doctor. She doesn't want extraordinary measures.” He told me with assurance, “There's a heart rate and a blood pressure. There is no choice to make now.” He sat with me in the quiet special waiting room. That's the room you wait in when something bad is happening. My daughter was a student at the university and the police had notified the dean of students; the dean arrived and stayed with me quietly and respectfully. Her presence comforted me and made me feel that my daughter was important. Different members of my division came in rotation to sit with me. I called my husband but couldn't speak. Someone took the phone, updated him, and told him he needed to come as fast as he could.
Two ER doctors came to the front to talk to me. They asked about my daughter's medical history, medications and allergies. They told me she had a “wide QRS.” I take care of babies. Arrhythmias are not common in neonates, and I could not process the meaning of a wide QRS. I stared at them blankly and told them that I didn't know what that meant. They did not explain further.
The clock told me that three hours had passed. At last, a social worker took me back to see my daughter. My child lay naked in the treatment room, with only a sheet twisted around one ankle. Her eyes were closed, and she was intubated and ventilated. The bloody puncture marks over her right clavicle were too numerous to count. Her arms were outstretched, perpendicular to her body. Two nurses bent over the veins in her hands, trying to place IVs. They didn't look up. A resident looked at me from the other side of the gurney, across her bare breasts.
I surveyed the room. Tree code carts were open, with doors askew. Medication vials, gloves and debris littered an empty stretcher that served as a worktable. Plastic trays and wrappings from central line kits were strewn across the floor. A large trashcan propped the door open to the central work area, where house staff sat at their computers. They laughed as one of them regaled the crowd with a story of the “dirtiest central line I ever placed.” A transport attendant wheeled a teenaged boy by the door with a shiny new cast on his leg. His family trotted behind and curiously glanced in the room. My daughter would have been horrified to be seen this way.
This was just another day at my hospital.
As a pediatrician, I used to be uncomfortable with recommendations promoting family presence during resuscitations and painful procedures. When I performed procedures on infants and toddlers, I always asked parents to wait outside. I would get them “when it was done.” In healthcare, we sometimes have to do awkward and unpleasant things to our patients; I wanted to keep that part of medicine secret. I justified the separation of child and parent with the idea that I was sparing them. I justified the separation hoping I would perform better if the parents weren't there. The truth is, separating parents and child made my job easier.
The option of family presence is standard of care at some hospitals. In these institutions, families are offered the choice to remain present with their child or loved one during procedures and resuscitations. They are also offered the choice to wait separately until the medical team has done its work. If the family decides to remain present, a nurse stays with them to provide support and explanations. The nurse is also able to ensure the family does not interfere with medical care.
My ER did not offer me a choice. My regret supports research findings that families prefer to be offered a choice. Those who choose to be present understand that healthcare is often awkward, and even gruesome. They understand that the doctors and nurses are doing the best they can. The knowledge of what happened to their loved one during resuscitations supports healthy bereavement, especially when a child dies.
During the three hours that I waited, my daughter's brain herniated. Her brain's reaction to oxygen deprivation was to swell. Ultimately, it became so swollen that it squished down from her skull towards her spine. My deepest regret is that I wasn't with my child at this terrible and precious time.
As I move into a future without her, I relive these three hours. The images of that time appear in frames and replay over and over again. I wish I could have protected her.
The image in the back contradicted my calm discussion with the doctors in the front. The back described a full-on code, with everyone prodding, pumping and ravaging a patient who is dead but should be alive. Didn't the doctors understand that the patient, and the family, didn't want extraordinary measures? Didn't the doctors appreciate that she was deprived of oxygen and perfusion for 55 minutes?
The image of her lying naked in a crucifixion position makes me wonder if anyone else noticed this.
In my darker moments, I wonder if she was a body that they practiced on. It was July, and new interns had just arrived. Did the ER attendings line up the interns to learn central line placement? “Go ahead, try on this one, she can't feel a thing.” Or, “this is a good one for your first, she's got great landmarks.” Or, “everyone should take a try; if you can't get it, it won't matter.”
Did anyone know she was a scholar at the university? She was like them. She was like their own children. She was one of ours.
Did anyone know she was an accomplished ballet dancer? Did they notice the exquisite beauty of her white shoulders and arms? Did they recognize the gorgeous line of her long, elegant limbs?
I can't know what might have happened if I had been in that messy and gruesome treatment room. I am left to wonder. Maybe I could have aborted the trajectory that futilely maintained my child for the next 30 hours. Maybe someone would have listened if I yelled, “Stop. Please!” Maybe I could have sat next to her and held her hand. Instead, I was in the front, and she was in the back.